I got iga nephropathy as an infant and was relatively stable until my twenties (I am now 34) but over the last 10-14 years my GFR has been dropping. Was at a 59 in 2008 and now at a 36 in July of 2019. I will admit, I smoked cigarettes, vaped nicotine and drank too much during those years and really had no idea what these numbers meant. I also had a really bad gout attack a few years ago and started eating medical marijuana (which by the way stopped my gout and cured my insomnia to the point where I dont have to take any supplements). Here is where I am at though...
My wife just gave birth to our 4th child. I am happily married, have a successful business and absolutely adore my kids. We travel a lot and are a fairly active family considering we have 4 kids under 7. I am freaking myself out by reading every single thing I can about CKD.
Question 1:
I am (obviously) willing to give up everything I love to live a full long life with my family. This includes, meat, alcohol, weed, salt, etc. That being said, I am irish and my entire life revolves around social events because of the size of our family and our businesses. These events all involve alcohol and meat. What do you guys recommend? Vegan with no alcohol or marijuana? To be honest, if I dont take marijuana before bed, I will usually only sleep for about 1 hour out of 8-9... Its a big deal and sleeping pills just made me groggy the next day.... I have read people say they take CBD and it has improved their GFR but I have also read studies online that say it can hurt the kidneys. What say you?
Question 2:
How long can you maintain a GFR number? If I change my lifestyle including working out at least 3 times a week and eat extremely clean how long can you maintain your GFR if you are in the 30-45 range?
Thanks guys!
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MPStilwell
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I don't really know how serious you are. Your kidneys aren't Irish and don't know about alcohol and meat, except that they have issues processing them.
I can't speak to the damage you have already inflicted on yourself but going forward, get serious about getting on AND staying on a kidney-friendly meal plan. That will include staying away from red meat, processed foods, sodium, tobacco, alcohol and everything else a qualified Renal Dietitian mentions after reviewing your last years worth of labs.
You also have to stay hydrated with water, and work with the doctors on your Care Team and develop an exercise regimen that you can stick with.
Keep a photo with you of your family and every time you are tempted to reach for a cheeseburger or an alcoholic drink look at the photo and decide which is the best option for them.
Great advice! I will do just that. My wife is a personal trainer so the workout part is easier than most as it is already built into our lifestyle. Its the beer that will be hard. I was way into BBQ and smoking meats too... Giving all that up right now. Just wondering if its ok to have a beer or two at a function? have you heard of anybody maintaining their GFR for 40 years or does it always decline even with a kidney diet? Thanks Mr_Kidney!
I can understand your feelings about smokin' meats. My specialties were brisket and ribs. A sad day when I had to sell my pellet smoker. Also, a cold beer with ribs or a barbeque pizza was great. I had to make a choice and I did. It's your life and your decision.
Just think about a plate of smoked ribs with an ice-cold beer, while you're hooked up to a dialysis machine having a 3-4 hour treatment instead of going on a trip with your kids. It's up to you.
Kidney function declines with age and declines even faster when abused.
The good news is that you may see some improvement in your renal function once you follow a renal diet created specifically for your level of renal function. You really need to see a dietician. He or she will give you sound advice. Then you’ve got to embrace it. Given what you’ve described, your kidneys have had to try to function with you eating and drinking stuff that is pretty difficult for them to process. So when you convert to a renal-friendly diet there may be some improvement.
Definitely get to a renal dietician and then do what that person tells you to do🐶
Thanks! Yes I am getting more labs done tomorrow and see my nephrologist on the 26th to go over everything. My GFR was actually at 31 in May and when I retook in July, it was 36. During that time, I quit vaping nicotine but was still drinking too much... I cant wait to see my labs!
Most importantly, put together a health care team who will both communicate with you as well as each other.
Have you seen your nephrologist? Important.
Print out your labs and review them before each appointment and list questions. List a sample of the foods that you have been eating and bring it with you as well.
Having your wife attend with you as a second set of ears and a scribe will be to your best interest.
I GA Nephropathy is an autoimmune disorder. What has your nephrologist had to say about the changes, your diet and this progression?
Your GFR as well as other kidney functions will fluctuate; hydration at the time of the labs will be one influence. In your case, it is important to investigate this.
Yes, changes are in order as keeping your kidneys as functional and healthy require a new lifestyle.
Your doctor and a renal dietician can help you put together a list of foods which will be best for and appetizing to you.
A diet low in sodium is key. Eliminate all processed foods as canned goods, bacon and unfortunately your smoked beef as red meat is not kidney friendly. Eggs, egg whites, fish and chicken are better choices.
Look at your labs, what are your potassium and phosphorus levels?
Less dairy and a diet filled with fresh or fresh frozen vegetables and fruits such as blueberries, strawberries and pineapple are great choices. You can steam them, roast them in olive oil and spices or even grill them. Grilled onions, peppers and asparagus are fantastic. Hydration and water is also important. It is all a lifestyle. Eventually you won't miss a lot of the prior food choices.
Truthfully, it is what you do today and in the future which will help; kidney disease is not curable but can be kept at bay. Smoking and alcohol consumption will not help; if you can have a drink every so often, let your doctor clear it.
Check medication and medication interactions. Drugs.com will help.
All of the reading is great, but can't replace meeting with and setting a health care plan in the company of a good nephrologist and PCP.
It will all work out, give them a call.
Feel free to reach out to any of us as we will always respond.
Thanks for the response! Good advice about bringing my wife to the doc. I will deffinitly be doing this. Meeting with my nephrologist in about 10 days to go over labs I am having done tomorrow. I am doing everything I read on here but am mainly just really depressed... I am so upset that my family will have to deal with me not eating with them on vacations, not being able to take my kids to their fav restaurants, and overall being a burden. I know it is way better than being dead or on dialysis, its just a lot to swallow right after having another baby.
There was a lot of depression in your most recent post. There is no comparison between death and dialysis. The only advantage of death is that it's a great way to cut back on your expenses. When you begin to look into dialysis you will find many options, including Home Hemodialysis. With daily HHD you can work, spend time with your family and even travel. PD can also be completed at home and you can choose which method best fits into your preferred lifestyle.
Why so morose about going out to eat with your family on vacation? You can still do this, just order a salad and if advised by your RD leave off the tomatoes and bring your own dressing from home. Order fish and ask them to leave off their seasoning and bring your own, like Mrs. Dash without all of the sodium they use in the restaurant. If you want a change of pace, order chicken, again without the seasoning. Most restaurants will work with you if can call them ahead of time. I've taken my grandkids to Chuckie Cheese and/or Pizza Hut (always their choice). They don't care that I'm not eating the pizza, they care that I'm there with them. Your kids will feel the same way.
Change your way of thinking to how proud of you they are going to be when they see you modeling the correct way to behave with a chronic illness.
You'll be setting a positive example for them and should the time ever come when they have to deal with some chronic illness they'll think back and say, "Hey, my dad was able to do and so can I." Even better, by watching you be more positive they may follow your lead and never have to deal with a chronic condition.
Thanks for the encouragement. I guess I am just looking for hope that I can push this off and maintain my GFR for 40+ years by eating right and exercising. If I knew that would work, I dont think I would be depressed at all because I would have a plan. I am good at sticking to plans!
I had to go back and read your original post. You do have a plan. FOLLOW IT! The first is to grow old with your wife. The other is to see your four kids grow up and become parents so you can spoil your grandkids. In order to carry out that plan you do EVERYTHING you can with guidance from your Care Team to get there. Do you really think that's not a plan?
Do you really think I can grow old with my wife? No one has really answered my original question. How long can I stay a 3b if I change my life like this?
Nobody can predict how long you can stay at a particular stage. CKD doesn't work like that. You help develop a meal plan and stick with it. It's a lifestyle change.
Stay hydrated, and follow your physician's advice and keep up your exercise regimen.
I’m not going to repeat the good information others have given you. Plus, your medical team will get you going on a solid treatment plan; you’ll just need to commit to working with them.
Instead I’d like to share what it was like as a child who grew up in a family with a parent with CKD. I suspect you’re not seeing your situation as your children will likely see it.
My father had CKD. I never knew him when he didn’t have CKD. As his CKD progressed he had various dietary restrictions enter his life. He struggled with anemia which was not effectively treated at that time; all they could do was give him blood transfusions which were marginally effective. We have MUCH better treatment options today.
My father worked full time as a band director. He also had a small jazz group that played for dances on the weekends. He directed the church choir and many other community music groups. Music teachers spend lots of time in the evenings and on the weekends with music activities, eg, concert, marching band activities, and so forth. Most weeks my father worked 50-60 hours.
He would take short power naps after he got home from school. While he was napping my siblings and I were encouraged to do our homework or play with friends outside. Our house was the go to house in our neighborhood. There was always something going on at our house. Plus my dad was a very popular teacher. We had friends over for parties and sleep overs. My mother managed the scheduling of all of this very effectively. The only real accommodation I remember us making for dad was giving him a quiet place and time for his power naps when he came home from work.
My mother also handled the dietary restrictions with ease. She literally had a variety of options for most meals; I’m talking about vegetables. We each choose what we wanted to eat from the 4 veggie options she had with each dinner. My dad would choose those that were low potassium to meet his renal diet restrictions. Meanwhile my siblings and I might choose mashed potatoes as one of our veggie options. When we ate out we almost always ate at resultant with a smorgasbord. Even if not, we would each order what we wanted from the menu. My father always ordered renal friendly options.
My father didn’t dwell on his CKD. He did what his doctors told him to do. But then he went on with life. He loved both his family and his students (and teaching). He got up every morning looking forward to doing both. He truly loved life.
He lived long enough to see all three of his children grow up, two of them married and had children whom my father adored. He put us all through college, ie, 3 bachelor’s degrees, 2 master’s degrees, and one doctoral degree.
Eventually his kidneys failed. My mother and I were his home hemodialysis care partners.. We were honored to provide home hemodialysis. In fact, he and I would watch professional football every Sunday afternoon while he dialyzed. He taught me the game. I still watch professional football today over thirty years after he passed.
He lived close to 20 years longer than his nephrologists expected. That was very likely due to how he lived. He did what they told him to do AND he did not let CKD define him; he lived his life.
My father loved life. He had a great sense of humor and a great attitude. I would not have traded him for a dad without chronic kidney disease. From him I learned how to live well with a serious chronic condition. What an amazing gift to give your children.
So I would encourage you not to assume you know how your children will feel or how it will effect them for the long term. You may be selling them short🐶
Thank you so much for sharing all of this. As you can tell, Im not doing well with it. I just look at my daughters and start crying imagining me not being there for them as they grow old, have kids, etc. Thank you for sharing. That helped a lot!
It will get better...get up each morning and commit to following your treatment plan for the day. As you get that going you’ll feel better physically. That should help a lot.
You can and will live well with CKD. You’ll learn to maximize each moment and cherish each day. Everything you do with your daughters now will shape the young women they become. It’s not the length of time you have with them; rather, it’s the quality of time.
And, you really have no idea how long you’ll live with CKD. I always say that I’m hoping for the best as I prepare for any inevitability🐶 CKD has definitely changed me; however, it may well have changed me for the better🐶
The words "kidney issue" and making changes are shocking, so your feelings are totally understandsble.
Until your doctor tells you that you are declining or need dialysis, etc. Don't go there.
Mr._Kidney gave you super advice in regard to many things. Listen to him.
You will not be a burden or not be able to go out to eat with your kids at their favorite restaurants.
It is about making good choices; knowing what foods are kidney friendly and will improve your overall health.
I was on vacation 2 weeks ago. The weather was scorching hot; I stayed very hydrated and drank water and seltzer at dinner. No soda.
My breakfast and dinner were all kidney -friendly and I came home without gaining a pound.
I had fresh strawberries and blueberries for breakfast and once or twice a piece of toast. Small iced coffee with my own non-dairy creamer for breakfast.
The host in this restaurant got to know me ( no explanation whyI ordered no melon) and automatically brought me heavy on the berries with a smile.
I wasn't even tempted to eat at a buffet nor desire sausages, eggs etc as I don't know how they were prepared.
Salads for dinner; onion, red peppers, cucumbers, chick peas which I am allowed. Home made oil and vinegar dressing. If not. Balsamic on the side.
My husband ordered similar.
We ordered flame grilled zucchini and asparagus from the sides menu as an appetizer.
( and we were celebrating our 16th wedding anniversary one of the evenings)
My husband and I socialize with other couples as well as my lunching with girlfriends and no one blinks. Only my brother and closest friends know that I have Membraneous Nephropathy.
Honestly, Wendy's makes healthy salads and will make them to order; no chicken, cheese at your request. If you are allowed a baked potato, order it plain and put a drop of butter on it rather chilli or cheese.
So, you are not closed off from the world; if you were a body builder, you might be on a special diet.
Bring a sample food list to your nephrologist and show him; I did with immediate feedback same as my PCP.
A renal dietician will also give you ideas. Maybe your wife will cook more kidney friendly for the whole family once she gets a list. Health for all.
Everyone above gave your great advice about diet and the drinking. Beer by the way, is often linked to gout because it is high in purines. A small, and I mean small, glass of wine might be a substitute you can try if you feel the need to have some alcohol.
No one said anything about the weed, so I will. Smoking and vaping anything is very toxic for the kidneys. Smoking pot is worse than cigarettes that have some filter on them, although there is nothing good about smoking cigarettes.
Now having said that, I get it about the sleep. I use every night a strong CBD oil to sleep. The quality of the sleep is so much better. I wake up refreshed. I have to get up at least once a night to hit the bathroom, but I fall back asleep much faster and consistently. Before, if I got up after 2:30am, which seems to be my time, it was the kiss of death as far as sleep went.
There is just a trace of THC in the tincture, but not enough to have any effect. I only use it at night before bed. I checked with everyone on my health team and they agreed that the quality of sleep was more important for me. Good sleep helps keep my A1C down, and my weight down. And no one had any concerns about the impact on my kidneys. One doctor has her own parents on it. Just be careful if you are not educated on the product because like anything, there is a lot of crap CBD oils out there. Do your research as I am sure what you have there is different than what we have here locally in the USA. Good luck and let us know how you are doing.
I may have to give CBD a try. I dont smoke it though... I eat it and its a 2:1 ratio (2 CBD 1 THC). I really struggle with sleep and this makes it 10 times worse... Was literally up all night worrying... I will deffinitly talk to my nephrologist when I see hi on the 26th about this. So far I have given up beer, alcohol, coffee and meat... Those are pretty much my favorite things so giving up my Med Marijuana (my sleep!) is not going to be fun. But i have 4 beautiful babies and the best wife a guy could ask for so I can do it!
Get new labs done as ordered by your nephrologist and try to follow these rules to preserve your kidney health:
1) Drink enough water/drink when thirsty
2) Don’t hold onto pee
3) Limit salt (1500-2000 mg salt/day)
4) No processed meats
5) Get enough sleep
6) Don’t over-use painkillers
7) Don’t overdo caffeine (1-2 cups coffee/day)
8) No alcohol - some web sites claim you can drink in moderation, but your kidneys are better off without it
9) No smoking
10) Don’t eat too much protein (no body-building supplements and no high protein diets)
11) Replace animal protein (meat & dairy) with non-soy, plant-based protein
12) Manage high blood sugar, if applicable. Get an A1C done - gives your average blood sugar over the last 3 months and is more useful than a fasting glucose test.
13) Manage high blood pressure if applicable. Target is 130/80 if you have CKD, target is 125/80 if you have CKD and diabetes.
14) Exercise/Lose weight (BMI < 25)
15) Don't drink soda, especially dark sodas like Coca-Cola
16) Find ways to reduce/eliminate stress
17) Get labs done based on the frequency your nephrologist recommends and track your progress.
18) Treat acidosis (low sodium bicarbonate), if applicable
19) Treat anemia (low hemoglobin) and iron deficiency based on labs
20) Treat high potassium and/or high phosphorus (you may or may not need potassium and phosphorus restrictions based on your labs)
21) Get tested for high cholesterol and treat it, if applicable. Your nephrologist should request a "lipid profile" every six months.
Very detailed. Thank you for taking all this time to help! These are great tips. I am committed to whatever it takes. I read a lot about people reversing the GFR by eating only whole foods or going vegan. While this sounds miserable for me, I would do it in a heartbeat if knew it worked. I will ask my doc again but last time he said, I didn't need to do this. I may not NEED to do it to maintain my kidneys but I would do it to IMPROVE my kidneys. You think that is possible?
As you probably know by now, most people who have CKD die of a cardio-vascular event, not kidney failure. The average life span once a person starts dialysis is 7 years. So, the longer you can put off dialysis, the longer you'll live, or so say the statistics. I'm trying not to become a "statistic"...
The #1 killer of those on dialysis is not a CVD event (as we are always told) rather succumbing to INFECTION. As someone who has survived seven (7) bouts of sepsis requiring weeks in hospital and powerful IV antibiotics I can understand this. Blessings
"Patients with chronic kidney disease have a high burden of cardiovascular morbidity and mortality. The vast majority of patients with chronic kidney disease do not progress to end stage renal failure, but do have a significantly higher incidence of all cardiovascular co-morbidities. "
"Most patients with CKD do not suffer from symptoms of uremia, nor indeed die from kidney disease. The majority of patients with CKD die from cardiovascular disease, before their kidney dysfunction requires replacement therapy."
Your journey has just begun. Let's see what your nephrogist has to say. Does he/ she put you on BP medication to reduce any protein that you may be spilling in your urine.
Let him advise you about medications, supplements, if any, permission for CBD oil and diet.
See if you can obtain a referral to a renal dietician.
Get a baseline as to where you are today and how to get you moving up.
I have IGAN so I can speak a little to this as well. Great advice from everyone on diet.
A few things I noted were that you mentioned your wife was a personal trainers. Personal trainers often recommend protein shakes/ supplements or bars. Don’t do that. There are recommended doses of protein for those with kidney disease. It is lower than average people and a protein bar could contain your entire days worth of protein without actually giving you all the good stuff from Whole Foods. Personally, I haven’t cut out all meat as I was losing too much muscle mass and getting really weak. I still eat small amounts of fish and chicken, but others do vegan and have seen great results.
Since IGAN is an autoimmune disease as Bet said, it’s important to keep inflammation down. Sugars, processed foods, tobacco, alcohol all cause inflammation. In particular you want to balance your Omega 3 with Omega 6. High Omega 6 can cause inflammation. Daily fish oil or flax oil has been shown to slow progression.
There have been some studies done on the effects of dairy and gluten on IGA Nephropathy- you’ll have to look at my previous posts on this or google it if you want to read the actual studies as I don’t have the links with me while I’m writing this. The studies were done many years ago and not much since then, but is showed Eliminating them has helped in some cases. My GFR increased after eliminating gluten, but I’m also intolerant to it, so it’s probably not for everyone. Something to possibly experiment with especially if you also happen to have stomach issues.
Often kidney patients suffer from insomnia. It was recommended to me to take melatonin. I take a very small dose and sleep much better now. Use caution with this as it can cause depression or suicidal thoughts in some people. It’s over the counter, but certainly consult your doctor.
Also, often with IGAN comes proteinuria (protein in urine) and or hematuria( blood in urine). Have you been tested for these? Particularly if you have protein in your urine, you need to get it under control. Your nephrologist can answer questions about that. You also need to understand your potassium and phosphorus levels. That will help determine the amounts and types of fruits and veggies and other foods you can eat.
Feel free to private message me with any further questions regarding this. There are several of us here with different stages of IGAN.
Good luck. For sure you can slow GFR down but it's inevitable that at some point your kidneys will fail. Don't fool yourself into thinking you are different than the rest of us. Follow a stricter diet. I'd not exercise or work out too extensively as that will increase creatinine. Be moderate. Have your wife look into the relationship of exercise and kidneys. in my case my GFR is 15. i feel fine, urinate, sleep, eat fairly carefully etc but I know that dialysis is just around the corner.
Well I echo most of what everyone else has said but will tweak it a bit. There is no ELIMINATING of anything in your life except smoking and taking ibuprofen meds. You can still enjoy a barbecue or a steak. Try to eat chicken, fish or shrimp too but limit them no Eliminate. A beer or two once in a while isn't going to kill you. Everyday though wouldn't be recommended. There are virtually NO studies about MJ and CKD. Consuming MJ has never been harmful to anyone within limits. Stay hydrated, exercise, control blood sugars, control infections. Live your life. You don't have to envision yourself on dialysis have bbq ribs and a beer. You can easily enjoy your steak and beer on occasion and stave off dialysis indefinitely. It doesn't have to be one or the other. When I began dialysis nearly 20 years ago the low protein diets were very controversial with most nephrologists against them. Now it's the other way around. We learn through the years. Healthy foods (plant based) with a bit of protein (chicken, turkey, fish) or the occasional steak is perfectly acceptable as your renal dietitian will tell you.
Most don't go on dialysis until GFR is below 10. So definitely strive to keep yours as is or try to improve it.
Thank you for your encouragement! How long have you heard of someone maintaining their GFR? Like I said I am a 36 right now but I was a 31 and May. Do you personally think eating like this and exercising would allow me to push dialysis off for 30 to 40 years? I’m only 34, am in good shape and am extremely determined... what do you think?
Honestly we just cannot know. We cannot foresee the future. I'd love to say " oh, absolutely" and then bam you're on dialysis. You could get injured be in a car accident have a horrible allergic reaction to something or get an infection that causes the improvement or status quo into emergency mode. I see you are very determined and being pro active is really the key. Self managing your health well is what really counts. For you I could see it happening but life has a way of tricking us. My husband always says he is God's personal pinata. If you ever want life in an upheaval just tell God your plans lolol. In all seriousness I have high hopes for you. Would love to hear how things are going. Keep in touch. Many Blessings
I had a kidney transplant 17 months ago and my consultant was behind me 100% when I told him I was trying CBD for pain relief. He said if it’s working for you stick with it. I hope that helps on that question x
Hi mp. I can relate. Got iga. Found out around 22 months ago. Got young kids. As the main bread winner Feel the pressure of somehow holding it together financially and personally.
I used to eat a lot of junk, drink a fair bit of booze. I've cut back on all that. There are some things out of your control and will be left to fate. But others like diet you can control. I've managed to only lose a few percent function in the past couple years (touch wood). Having said that I'm 23 gfr so not great.
The thing i will say is doing something in moderation is not a bad thing. Having a couple beers is ok, but keep the binged drinking sessions to special occasions. I find simply drinking slower or buying bottled beers (which are smaller than pints) means i can attend function's and still feel part of it. Also diet absolutely is critical. But having a steak or a blow out once in a blue moon is ok.
Take a flu shot and stay away from sick people. I think i dropped my few percent when i got sick once. Take fish oil. It's not proven that it helps iga but some say it might so why not.
And the depression and anxiety i can understand. Feel it every day. Turning up to work as i tyoe this just wanting to turn around and go home. Never dreamed I'd be the kind of person to see a shrink. It hasn't stopped me feeling shite most days, but it helps.
Finally have you chatted with relatives about a live donor donation? I don't think it's something you can ask outright. But just talking to people about your situation may prompt a volunteer. I
Hey just as a curious little related question?! Have u had IgA nephropathy history in ur family or parents ? I m just trying to find out if iga can be inherited and have family relations ? Cheers if u could reply on that
Nobody in my family has it. I got it as an infant in the hospital. I went in for pneumonia and caught e coli in the hospital and eventually it turned into kidney failure.
IGA nephropathy is a type of autoimmune disease that attack kidney mostly be depositing imuunoglobin IGA in the tissue of kidney and affecting the function
I would stop drinking and vaping and eating crap. .. the gfr can be stable for years but naturally declines as you age. So get a plan B...ask family members if they would be willing to donate a kidney if you get to that point. Also a vegan diet will take care of the gout.. do you have protein in your urine? That is an indicator of speed of progression.
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